The Patient-Powered, Provider-Reviewed Educational Literature Series was developed by the Sickle Cell Community Consortium in response to a Warrior-identified need. The Community noticed that they rarely saw brochures, pamphlets, or literature of any type in doctor's offices and clinics around the country. To address this need, the patient community decided to create our own literature.
Our first publication, "A Guide to Living with Sickle Cell" was created in 2017 by partner Cassandra Trimnell, of Sickle Cell 101, in collaboration with Bold Lips for Sickle Cell and a network of nearly 200 patients and caregivers. Thanks in large part to a generous grant from bluebird bio, the first in this series is now available in both English and Spanish.
In the years since several more patient-powered publications have been created by the sickle cell community. Among them are: